Beata Ferencz, Project Manager, Rare Diseases Sweden
Beata Ferencz is a project manager at Rare Diseases Sweden, an umbrella organization that represents rare diseases patients in Sweden. Her current project “Learning together – person centered care for rare diseases “has the primary aim to improve healthcare for individuals with rare diseases with patient representatives and care professionals working in close collaboration. Together with the Center of Rare diseases and our patient representatives we are striving to improve care together with patients and not for patients.
Beata has her background in neuropsychology with a research MSc from the University of Maastricht. She recently received her PhD from Karolinska Institutet and her thesis focused on genetic and lifestyle influences in cognitive aging and dementia. Following my experiences as a parent to an amazing boy with Williams syndrome I entered the field of rare diseases with the humble hope to improve healthcare for individuals with rare diseases.